Three things you shouldn’t say to someone with chronic illness

by Alaina Mabaso

This is a recent MRI of my lumbar spine. Can you spot the two bad discs?

This is a recent MRI of my lumbar spine. Can you spot the two bad discs? OUCH.

When I read the story about a Danish woman with multiple sclerosis who ran 366 marathons in one year — yes, one marathon every day for 364 days, and then two marathons on the 365th day — I wanted to hurl my computer against the wall, and not just because I’m jealous of her amazing feat.

“I can choose to be, ‘Oh, tell everybody I’m not feeling so well,’ or I can tell myself, ‘No, I want to feel good and tell everybody I’m feeling good.’ It’s my choice. That’s kind of a freedom,” the runner says on CNN.

Negative Nelly alert

I think this case is an extremely unusual one. Most of the time, it’s just not true that wanting to feel good and telling others you feel good when you don’t feel good will free you from your illness.

I understand the need to deny or conceal your medical condition(s). I do it every day.  Some of my doctors are surprised that I work instead of claiming disability for a slew of major health problems. But I love my work, and on most days, I find that You can do it is a better internal mantra than damn I need to get in bed and rest until someone brings me dinner.

But I also need days when it’s safe to acknowledge how tough things are — the days when it’s hard to walk, or when tears hotter than the water pour down my cheeks in the shower, because it’s the only time when nobody else can see me or call me on the phone, and something just slips.

Unfortunately, that safe space can be hard to come by, because it means finding people who are willing to see the pain when they see me, without retreating into fear, pity, contempt, platitudes, or unsolicited advice. In other words, just like cutting the high fructose corn syrup is as important to your diet as eating vegetables, pinpointing the things we don’t need is as necessary as focusing on what we do need.

My unsolicited advice for you

So this is a short and potentially painful, inflammatory list of things not to say to me, a person with a chronic illness.

  • “How do you think this makes me feel?”

This should be saved for when someone healthy is behaving in a cruel, disrespectful, or irresponsible way. It should not be used when a sick person is struggling. A truly debilitating illness, including a mood or mental disorder, causes stress to everyone who loves the sufferer, and the sufferer is very aware of that, even though he or she is no saint.

There may be other people in your life who can be an appropriate ear for the legitimate stress and pain you feel when someone you love is sick, especially when that illness is a lifelong slog, not the flu or appendicitis.

The plain truth is that sometimes, I just can’t handle your stress about my illness on top of my own stress about my illness. I apologize. But it effing sucks to feel sick all the time, and I’m not the emotional reincarnation of Hercules.

  • “Have you tried the [nutritional fad] diet?”

Most of the time, I’m willing to give you a pass on this one, because you have the best intentions. But here’s the thing. If I have been diagnosed with a life-altering and lifelong illness, I’m probably under the care of medical specialists, and a proper diet is already a component of the plan to manage that illness. I appreciate your desire to help, but don’t need diet tips from every corner.

My own diet, to manage problems like migraines, fibromyalgia, and interstitial cystitis, is already restrictive enough to affect every meal. I have spent over a decade on my own mission to track what foods and beverages work for my body.

Plus, I bet you a million dollars that Häagen-Dazs isn’t in whatever diet you saw featured on the raw/gluten-free/paleo/macrobiotic/probiotic/vegan recipe book table at Whole Foods this month. And if you wanna take away my ice cream on a rock-bottom shitty day, what’s left?

So remember, I’m already on a strict diet; stick to your own diet, and zip it, unless you are very, very familiar with my illness, and I ask for your advice.

  • “You’re too young for this!”

This one is the real topper, because I hear it all the time, from friends, family, colleagues, and even doctors.

KNOCK IT OFF.

It’s hard to even list all the reasons this comment makes me feel like crap, but I’ll try.

Yes, I do have some problems that are more common in elderly people than in people just shy of their 31st birthday. But remember — just because something is true does not mean it is appropriate to blurt it out over lunch.

I understand that you’re trying to say something sympathetic and I appreciate that, but really, how is this comment helpful? All it does is remind me of how debilitated I am. Part of the struggle of chronic illness for young people is that our bodies are indeed failing us in ways they ordinarily wouldn’t at this age. (If you dread aging in a healthy body, how do you think it feels when serious pain or limited mobility sets in before age 30, when everyone else is hiking and biking and birthing one cherub after another?)

Also, you may be dead wrong when you say “you’re too young for this.” Yes, pain and debility are usually associated with aging, but in many cases, a chronic illness is a matter of our genes, not our age. If I have the illness, I have the illness, and it doesn’t wait politely to strike until after I’m eligible for Medicare.

Think of adults with attention deficit disorder, something often associated with children. When the adult ADD sufferer has trouble focusing, would you exclaim, “You’re too old for this”? No? Then don’t pass audible judgment on how an illness relates to someone’s age. It’s not comforting and it’s not a compliment.

Beyond positive thinking

This blog post may just be one long example of why I am not as good a person as the Danish marathon runner. But it’s my truth. And it’s ok if you officially do not want to hang out with me, or read my essays.

I can understand the kind of positive thinking that allows a person with multiple sclerosis to run over 26 miles a day. It’s probably similar to what drives me to meet my deadlines and satisfy clients week after week. But positive thinking without an honest assessment of what really hurts — in our bodies and in what other people say — is like a hot air balloon without a basket. It floats uselessly away with nothing to let you get onboard and no way to ground yourself when necessary.

Do you have a chronic illness, or does someone in your life struggle with this? What are the comments that help or hurt you?

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